Endings, Beginnings

What good is it, my brothers and sisters, if you say you have faith but do not have works? Can faith save you? If a brother or sister is naked and lacks daily food, and one of you says to them, ‘Go in peace; keep warm and eat your fill’, and yet you do not supply their bodily needs, what is the good of that? 

James 2:14-16 (NRSVA)

This was part of my bible reading for yesterday, 31st December 2018. It was particularly striking for me because it seems to be the summation of what God has been speaking into the lives of my family and I.

I’m beginning 2019 with Veganuary, for a combination of reasons. Going vegan is the single best action I can make for the environment. Countless studies have shown this. Here’s a recent one. I also wrote a blog post about climate change a few years back.

Climate change affects the poorest most, so addressing my contribution to this is something I can do that is concrete. I also don’t want to be party to the treatment of animals that takes place on farms and in abbatoirs. It’s violent whichever way you look at it and I can’t reconcile the compassion that I have learned through following Jesus with violence in whatever form. I also have health problems and veganism has been demonstrated time and again as the antidote to so many health problems that for someone like me, I can’t not do it.

We’re also developing a proper financial system for our family so that we can be more responsible and more accountable with our money. Not that we’re exactly irresponsible, but we’re not as mindful of all our assets as we could be. Our income has dropped rapidly in the past few years so it was necessary and long overdue. It’ll mean focusing on the important things.

So I prayed about what should be my phrase or word for 2019 and came up with this:

KEEP IT SIMPLE.

Seems obvious, but Complex PTSD can make things feel overwhelmingly complicated, so this is a real blessing just on its own. Be blessed, friends, in 2019. Lay down your life for Him so that He can pick it up. Shalom.

Where is your power to hurt?

For what is mortal must be changed into what is immortal; what will die must be changed into what cannot die. So when this takes place, and the mortal has been changed into the immortal, then the scripture will come true: “Death is destroyed; victory is complete!”

“Where, Death, is your victory?
Where, Death, is your power to hurt?”

Death gets its power to hurt from sin, and sin gets its power from the Law. But thanks be to God who gives us the victory through our Lord Jesus Christ!

So then, my dear friends, stand firm and steady. Keep busy always in your work for the Lord, since you know that nothing you do in the Lord’s service is ever useless.

1 Corinthians 15:53-58 (GNT)

In the past five years, I have lost various friends and family members, ranging in age from 36 to 96. It has made me realise that our culture acts as if death is something that can be overcome by sheer willpower, or else something to be ignored, until it happens. Which is ridiculous. Old age and infirmity are treated in the same way. Also ridiculous.

To prevent some of the painful, distressing events that occurred when my in-laws became infirm and subsequently died, I have come up with a plan: a questionnaire about funeral, burial, infirmity, illness and the dying process. If I can get everyone to fill it in this Christmas (which is the next time we’re getting together as a family), from the youngest to the oldest, maybe we can be a little better prepared for when the inevitable takes place.

What happened with my in-laws, as much as it was distressing it was equally infuriating because with a little bit of planning and forethought, so much could have gone so much more smoothly. Their suffering, let alone that of their nearest and dearest, could have been reduced. I’m not in any way blaming my in-laws – they were just behaving in the culturally-accepted norm. Everyone was trying their best as they saw it at the time. But it is a norm that is unnecessary and can often be actively harmful to both the ill or infirm person and to their loved ones. I don’t want my kids having to make those kinds of decisions when the time comes, or for them to be placed in those circumstances. I want them to already know, to have it right there in black and white what my wishes are about end-of-life care and what happens after.

I came across this video on youtube that may be helpful (in fact there is a great deal of helpful content across the channel as a whole):

I can also recommend the following books that changed the way I approach old age, infirmity, illness, dying and death:

Contented Dementia by Oliver James

In the Midst of Life by Jennifer Worth

Smoke Gets in Your Eyes by Caitlin Doughty

The Practice of the Presence of God by Brother Lawrence

Are there any books, videos or websites that you can recommend on any of these subjects? Let me know in the comments. Thank you. God bless you.

Lions and Tigers and Bears, Oh My!

We’ve had an eventful couple of days. Fluff had fallen asleep with her main light on on Saturday night. Frank and I had gone to bed. She got up to turn the switch off and tripped on her way back to bed, falling face-first into the side rail. This caused an immediate massive nosebleed so she took herself to the bathroom, which is thankfully next to her bedroom, and promptly passed out. When she came to – which may have been as much as 30 minutes later – she called her sister and Chip ran downstairs to get me.

I dashed upstairs into a scene from a horror movie. There was blood everywhere. Fluff had begun to go into shock and was standing in the middle of the bedroom looking dazed and shivering, so I grabbed a blanket and wrapped her up in it, then made her climb into bed with her duvet tucked around her. Seeing a protuberation on the side of her nose I checked to see if it was in fact bone sticking out of her face – it wasn’t (at least, it had not broken the skin), but that and the bloody gash made me concerned. I told Chip to stay with her, warning her to call for me immediately if Fluff changed in any way, and made my way downstairs to the telephone. I dialled 999 and requested an ambulance.

Meanwhile, I used another phone to call my dear sister, the consultant paediatrician. I would advise anyone with children to have a consultant paediatrician for a sister. Very handy. She instructed me to give Fluff a cup of tea with sugar in it, so I sent Chip – suddenly turned remarkably helpful – off to put the kettle on. It’s true – the English response to any emergency is a cup of tea and I can confirm that this is endorsed by the medical community* (or at least, my sister). While we were waiting for Chip to return I prayed with Fluff.

By the time the ambulance arrived, poor Fluff was still shivering and looking dazed. On seeing the trail of blood, and the blood all down her legs, the paramedic – in his dry, Northern manner – commented that it was just in time for Hallowe’en.

Fluff managed to walk to the waiting ambulance and Frank went with her. I drove behind with Prince and Chip. It was a long night. A&E on Saturday night was busier than usual, including several individuals who were rather the worse for wear, but we all sat patiently in the waiting room, as we English do, the rough and the not-so-rough together. The police brought someone in and they too behaved as calmly as if they were just off to walk the dog. Gotta love the police.

Two young women – we’ll call them May and June – around the age of 20 brought their friend in – we’ll call her Sally – who had drunk too much, fallen and hit her face. May called Sally’s parents and calmly explained what had happened while Sally loudly informed the receptionist of her name, date of birth and address, so that everyone in the waiting room overheard. June held Sally’s head and her sick bowl and gave continual reassurance. That right there, I thought, is what it means to be a friend. I whispered this to a wide-eyed Chip, who was watching them with fascination adding, “Note how the other two are completely sober… You can have fun without getting drunk – and it’s safer.”

At just after 4am, as we were leaving the hospital, Sally was still there, and with a sheepish expression explaining herself to her bemused-looking father. She was much more alert. I reckon the only lasting damage was a bruised ego, poor girl. Sally’s situation was, I feel, quite an important thing for an impressionable 13-year-old to witness. Funny how things happen.

Fluff was admitted at 3am and subjected to a series of tests. It’s a forty minute drive to and from the hospital but I was back with her by 11am. She apparently had no memory of the night before, and had woken up in the hospital bed wondering what had happened to her bedroom, though she did remember falling. She kept asking to go home, insisting she was completely fine (she has an extremely stubborn tendency to stoicism). And eventually, after having seen the maxillofacial surgeon and having an ECG, deemed fit to leave, only now she was disappointed because she wouldn’t be getting the meal she had ordered for tea!

Throughout everything that happened, I remained calm. I was, however, concerned that the staff took Fluff’s symptoms seriously. This is the same hospital that missed symptoms of an aneurysm in my very dear friend last year which led to her death hours later, at the age of 38, after they sent her home. That was, as you can imagine, utterly devastating not least because she was such a vibrant person, so I kept reiterating the pertinent points about Fluff and her fall, probably tiresomely, to all the doctors and nurses.

Fluff is fine. She has a black eye and looks like she did a round in a tent with a feral cat but she and her brother are now happily playing with their guinea pigs and eating ice cream. I am cream crackered and resting, but fine. What I want to know is this: how come attending a theatre group prompted the PTSD blitz, yet going to the hospital with my bloodied daughter, in the same place my dear friend’s fatal illness was missed, prompted a self-assured, calm competence? What the flip is wrong with my head? How come the EMDR and BWRT have worked in some areas but not completely?

Meh. It’s all a journey. I’m just glad Fluff is ok.

*Please note that any reference to the consumption of tea as the true English cure-all is not intended to act as a substitute for proper medical advice…

 

 

 

 

 

 

Patience

William was rather late to lunch. His father and mother and elder brother and sister were just beginning the meal. He slipped quietly and unostentatiously into his seat… 

“William,” said Mrs Brown, “I do wish you’d be in time, and I do wish you’d brush your hair before you come to table.”

William raised a hand to perform the operation, but catching sight of its colour, hastily lowered it.

“No, Ethel dear, I didn’t know anyone had taken Lavender Cottage. An artist? How nice! William dear, do sit still. Have they moved in yet?”

“Yes,” said Ethel, “they’ve taken it furnished for two months, I think. Oh, my goodness, just look at William’s hands!”

William put his hands under the table and glared at her.

“Go and wash your hands, dear,” said Mrs. Brown patiently.

For eleven years she had filled the trying position of William’s mother. It had taught her patience.

from Just William by Richmal Crompton

After a particularly taxing day yesterday, I just had to share with you the one thing that, on hearing it this morning (read by the inimitable Martin Jarvis), made me nearly snort out my morning cuppa. Seeing the funny side somehow makes things better, even if it doesn’t resolve them. Thank God for humour 😉

Abiding

It has been well over a year since I last blogged. Is anyone still following my blog? I think of you all often! The sudden and unexpected death of a very dear friend left me reeling just over a year ago, and we also experienced great upheaval, more trauma… I didn’t want to write about any of it on my blog because some of it wasn’t my story to tell. The trauma involved family members rather than me directly and although it was bloody awful for me, it’s still not my story to tell. Perhaps one day those involved will desire to tell their stories. Perhaps not.

As for me, my illness has significantly improved. I was in a wheelchair every time I went out for about nine months. Now I can walk a mile or even two on a good day and I continue to get better. I am so grateful. I meditate (nearly) every day. Mindfulness meditation has become a wonderful tool to enable me to cope with everything that we have been through and to support family members who have needed it.

I’m now a home educator <gulp>. Fluff decided she had had enough of school so we’re doing Year 11 from home, which has been interesting to say the least. I am enjoying it, but it is also exhausting and sometimes overwhelming. Yesterday I felt quite unwell and stayed in bed for most of the day after dropping Prince off at school. He’s still at school, bless him. We have another year before we have to send him off to special needs college.

Our daughters have made some drastic changes – Fluff is now vegan and extremely vocal about it. As part of our homeschooling she is studying Music (clarinet and piano) and GCSEs in Maths, English Language, Double Science and Geography, along with ABRSM Music Theory. She is determined to study plant-based nutrition and environmental science at university. Chip has become vegetarian and sees herself as a social activist. She is excelling at school and loving her weekly theatre school. They are both involved in Girl Guides and Fluff has become a Young Leader with Rainbows. She’s also just completed her Silver Duke of Edinburgh Award. My children make me smile.

My darling husband is still working hard for his family and enjoying his role-playing games. He’s also assisting with homeschooling, especially Maths as that’s his speciality.

Our guinea pig brood grew (and shrank, sadly). We now have three, two girls and a boy. Cookie is snuggled up under my chin as I type, making little snuffling noises to tell me she is happy. She’s a black and white squeaky fluff-ball and very cute with it. The piggies even came camping with us in August when we went up to see Hadrian’s wall. I fell head over heels in love with the Northumbrian National Park.

Vindolanda © Simon Robinson, 2007 / CC-BY-SA-3.0 & GFDL-1.2.

“All shall be well and all shall be well and all manner of thing shall be well.” – Julian of Norwich, Revelations of Divine Love

“This moment is as perfect as it can be.” – Richard Rohr, Letting Go

“As the Father has loved me, so I have loved you; abide in my love.” – John 15:9

How are you? How’s life been treating you? What is God doing with you in your life?

 

Ramblings

My next door neighbour mowed the lawn wearing a bowler hat this afternoon. #This is England. Did I do the hashtag thingy right? I like my neighbour.

My daughters cycled into the countryside and I had to go and ‘rescue’ Chip when Fluff’s enthusiasm came up against Chip’s lingering cold and the cold won.

Two of our rescued guinea pigs couldn’t stand the sight of each other this morning, but after a run around outside, followed by a thorough exploration of the dining room (with accompanying inquisitive squeaks that sound like they’re saying ‘what-what-what-what-what?’) they decided they liked one another again. They’re so funny!

Continuing our month of Living Well and Spending Zero, we are using up what’s in the cupboards, including some fairly ancient packets. Chip made strawberry blancmange for pudding. Despite the fact that she even made it with almond milk, Fluff insisted it could not be vegetarian so refused to eat it. Oh, well, more for me… I like strawberry blancmange. It’s the same colour as Bagpuss. I am a big fan of Bagpuss. I have a mug, a cushion, a tee-shirt, a pyjama case and a small toy Bagpuss that makes a yawning sound when you squeeze his tummy, just like the real thing.

I got an animation kit for my birthday and I have yet to use it. Bagpuss and Mr. Benn are definitely my inspiration. I’ll have to get it out! That’s the trouble with this stupid illness. I spend the vast majority of my energy looking after my family and then I don’t have any energy left to invest in creative stuff

Frank went along to a Sunday afternoon games group. He loves role playing games but there aren’t too many people who are interested nowadays. Not that I can imagine it ever being a particularly popular pastime.

I was going to lead our Sunday night bible time with some colouring-in of printable bible verses, but I was too tired. Sorry, God It’ll have to be a Monday night bible study instead. I don’t suppose God minds.

I added a row to my crocheted blanket this afternoon, having pointedly ignored it for a month. It is blue with sparkles and is a repeating pattern, but I keep forgetting the order of the stitches and having to relocate the actual pattern. When it is finished, it will be presented to my sister, who loves all things blue and sparkly and who is, at the grand old age of 37, moving into her first unfurnished flat.

I have taken to downing a mug of Clipper Sleep Easy tea before bed and I have to say it works a treat. So much so that I have stopped taking my bedtime tablets because I don’t seem to need them.

I have been out for a walk every day since Monday and I think it has been doing me good. I read that studies have shown that sunlight itself has a positive effect on the brain and when combined with exercise (even if it’s only the limited amount that I can manage) it is highly beneficial for health. I still fall into bed exhausted of an evening, but I suppose that’s a good thing.

 

Does my Bum Look Big in This?

Tending to the guinea pigs, I bent over to push a lettuce leaf through the cage bars. As I did so, my daughter reached out and pulled something from my behind. It was a sticker. She read the words of the sticker aloud:

“100% UV filter…”

There was a pause, and then she added, “Mum, it’s official; your bottom is so big it blocks out the sun!” The whole room exploded in laughter.

True story

 

Here’s another:

The plumber had come to remove the old gas cooker. He was having difficulty reaching in the small gap between the oven and the wall. As he bent further and further, his trousers began to creep down leaving his underwear showing. He grunted and gasped and then finally, with an extra effort, said, “Aha! I can see it all now!”

“So can we!” My dad, usually so very polite, exclaimed and raised his eyebrows at what was now on view.

Struggling Grace

No one can acquire any virtue unless he begins by dying to himself  ~ St. Francis of Assisi

…regarding your previous way of life, you put off your old self… and be continually renewed in the spirit of your mind [having a fresh, untarnished mental and spiritual attitude], and put on the new self [the regenerated and renewed nature], created in God’s image, [godlike] in the righteousness and holiness of the truth [living in a way that expresses to God your gratitude for your salvation].

~ Ephesians 4:22-24 (AMP)

I have been crucified with Christ [that is, in Him I have shared His crucifixion]; it is no longer I who live, but Christ lives in me. The life I now live in the body I live by faith [by adhering to, relying on, and completely trusting] in the Son of God…

~ Galatians 2:20

PTSD? Depression? Grief? PMT? Who knows? All I know for sure is that I have been struggling lately. I know the death of my mother-in-law shook me up (actually, not her death – because she was a woman of faith – so much as the suffering that preceded it) and I know that the flashbacks have returned (PTSD: such fun!) but in a different form, and I know that hormones are a right bugger at certain times of the month (‘scuse me, gentlemen), but I don’t think I’m depressed. Just floundering a bit. Feeling a bit overwhelmed. Even though it’s mostly my own brain that’s doing the whelming. Mind you, Prince is poorly again and that breaks my heart because he is in pain and there’s nothing I can do and I can’t explain it to him – it’s difficult enough to explain to a neuro-typical child, let alone a young man with autism Then there’s my dear husband who is struggling with grief at the loss of his mother. I am quite inadequate at offering comfort. He hurts so I hurt. That’s what having a strong sense of empathy does. You feel other people’s feelings, especially the bad feelings. It’s good because it begets a deep compassion, but it can have a down side. I feel too much, sometimes. Other times I feel nothing at all.

So I go back to the bible, back to the words of people who followed Jesus with their whole being. The death of self that St. Francis is talking about in that first quote, above, is not just dying to the old selfish, sinful ways, it’s also about dying to the old negative thinking patterns – that I am useless, unworthy, a waste of space. These are all the feelings that have been floating around my head and the worst bit is that they stop me from being able to think straight. I have the desire to be caring for my family and looking after the house, but my head gets stuck and I can’t figure out what to do and then all I want to do (all I feel able to do) is to curl up in bed and do nothing. But then I feel bad because really I do want to be caring for my family and curating a loving, organised, fruitful family home.

Oh, sweet Jesus! The spirit is willing but the flesh is weak. Bring me once again to my knees as I wholly and completely put my trust in You to accomplish even the smallest of small things for Your dear name’s sake. I am quite useless without You, yet quite marvellous with You. Use me. Give me the awareness of grace – five minutes at a time if need be – and help me to share Your grace with everyone I meet. Help my poor boy to feel better. Show me what I can do for him and to encourage him. Help me to be whatever my husband needs as he comes to terms with his loss.

In Your name I pray. Thank you for this gift of prayer.

Amen.

I write all this here not as a way of seeking attention. I don’t want attention, although kindly thoughts and prayer would be an encouragement. I hope that this might help someone else going through the same sort of thing to not feel so alone, but the main reason I write this is because true testimony begins with honesty – and that includes the bad… all the while knowing that God is always good.

A Non-scare

“Fluff, what does ‘gullible’ mean?” Chip asks her big sister.

“It’s a swear word!” Fluff sounds shocked. “You mustn’t say it!”

Chip looks at her sister. “It isn’t.”

“It is!” Fluff is insistent, although she is smiling. Chip is unconvinced.

“Muuuum?”

“Hmm?” I look up.

“What does ‘gullible’ mean? Fluff says it’s a swear word.”

“It’s not swearing.” I pause. “There’s no such word, Chip.”

“Really? Fluff said it was a swear word!”

“No, it’s not a swear word.”

********

Two weeks later we are waiting in the hospital for me to see the breast specialist about a lump in my *breast. It is the same hospital in which we visited my dear mother-in-law before she died three weeks prior. Emotions hang raw in the air.

I am sitting with my new crochet project and Chip is quietly reading. She is, like her mother, addicted to stories.Suddenly she jumps up and runs over to me, her index finger against a word on the page.

“See, Mummy!” She cries, “It is a word!”

I look at the page to see what she is pointing at. I smile up at her and all of a sudden she gets it and looks at me with dismay, then disapproval and then amusement. There is a gleam in her eyes that I know means she is thinking of a way to get me back (the girls and I love jokes, but Daddy and Prince not so much, so we don’t play jokes on them). Prince wants to know what was funny and so I explain to him, several times, until he understands and grins. A difficult day becomes a little lighter.

*******

*It was just a large cyst, which was drained with an enormous needle. I am prone to them, apparently.

My word I was grateful that it was only a cyst! Not because we wouldn’t have somehow dealt with/struggled through any eventuality (because who has a choice in these things?), but because the last few months have been really hard. This non-cancer-scare actually felt like a bit of a turning point for me. It’s not just the grief of losing someone you love that can cause distress after the event, but the weeks leading up to death during which a loved one is suffering. I had become consumed by my mother-in-law’s suffering. I couldn’t bear to see her like that. I researched strokes and vascular dementia and end of life care, etc., etc., just to try to find some answers that would limit her intense distress. I came up with very little, to be honest. I just wanted to make her feel better. She was clearly distraught and in pain. I eventually realised that ‘the Lord gives and the Lord takes away’ and there was not one thing I could do about it either way, except be there for my husband, and pray. I don’t think I did a very good job of either.

Sometimes a non-scare can give you a bit of perspective.

On Autism, Family, Grief and Kindness

During the funeral for my mother-in-law last week, I made sure Prince stayed with me. I carefully explained exactly what would happen beforehand and although the girls went with my parents, Prince stayed by my side the whole time.

Prince is 17 years old and has autism. He goes to special school. He struggles with anxiety so was, of course, very worried about what the funeral would be like. I think he thought we’d all be wailing and moaning and falling over one another or something, because beforehand he was constantly asking me if it was ok that he was sad, but not very, very sad, and he was glad Grandma was not suffering any more (he didn’t word it like that but I think that’s what he meant). He also said, quite bluntly, that although he liked Grandma, he didn’t know her very well, so he wasn’t as sad as he would be if it was his other grandmother, whom he knows very well. Which is fair enough. I told him not to say that to anyone else, though!

To be honest, when we would take Grandma out (she lived in a lovely care home for the three years prior to her death) I was mostly thinking about how to manage her with her frailty and dementia (make sure she is not distressed or too tired, keep her upbeat and happy by talking to her and constantly reassuring her, even if I’ve already done exactly the same thing a dozen times or more), Prince and his autism (minimise anxiety, keep him passive), boisterous or bickering girls (make sure they’re not forgotten in the need to put Grandma and Prince’s needs first) and a husband who gets easily distracted and might not notice if his mum is about to topple over or something (keep an eye on him). This family time was lovely – my MIL was lovely – but could also be quite stressful, so encouraging anything other than quiet, non-anxious, absorbed-in-his-radios behaviour from Prince was never really the priority. I don’t mean to sound mean towards my husband. He had all the same things to deal with, along with my PTSD and CFS, so we have always had to look out for one another. My point is that I didn’t seek to encourage interaction between Prince and his grandma.

On the day of the funeral I made sure Prince was with me, to make sure he was ok. I didn’t want to risk my parents saying the wrong thing to him, however well-intentioned they may be. I sat in the pew first, followed by my son and then my husband. During his sister’s beautiful eulogy, Frank began to tear up and I saw him wiping his eyes and nose. I felt bad that I hadn’t sat in between them both, but I couldn’t move as that would distract from the eulogy. Then came my turn. I stood and walked to the front of the church and read a poem I had originally written after the death of Frank’s dad. As I came to sit back down, I deliberately sat in between Frank and Prince. I took Frank’s hand. He squeezed mine. The tears began to flow. I reached for the tissues and thanked God that I had kept it together until after my poem. Then, to my surprise, Prince took my hand in his. He didn’t say anything, but this little gesture from a young man for whom touch is anathema made me realise what a wonderful boy I have. That simple act of taking my hand meant so much to me that I can’t really describe it. You won’t know what that’s like unless you’re a parent of a child with autism yourself. Prince saw that mummy was sad and he wanted to make me feel better.

I love my boy. I love his innocence. You can take your neurotypical sons. I’m glad they have parents who love them. I’m glad they will have the chance to ‘succeed’ in life, to go to work and have a family of their own. But I wouldn’t change a hair on my boy’s head.

This is a large work I’ve called you into, but don’t be overwhelmed by it. It’s best to start small. Give a cool cup of water to someone who is thirsty, for instance. The smallest act of giving or receiving makes you a true apprentice. 

Matthew 10:42, The Message

I think my boy is a true apprentice, even if he doesn’t know it.